Wednesday, March 19, 2008

It all started when we drove to the airport (which is only 5 minutes from our house)...the long term lot is FULL...and it says you have to park across from the airport in overflow parking!!(Now...I wasn't sure if that was even possible, because then I'd have to take a shuttle...with a stroller, three suitcases, and a rolling oxygen concentrator. (I'm still not sure why the airport was packed on a Tuesday mid-day?!?!) So...thank goodness Joe always valets his car...and so I know right where to go. I looked like a complete idiot valeting my dirty old mini van...but, it was better than trying to catch a shuttle with all my junk!

Now...we're in the airport (I wish I had pics to show you....but, I'll try to explain it)...you better pee first...you might laugh so hard you pee in your pants!!!I'm pushing Isaac in his stroller, carrying his baby bag, and pulling the oxygen concentrator (which is the size of a small briefcase on wheels). Chris is pulling a BIG carry on...and a small one that I attached to the big one. Eli is pulling his small suitcase that has their toys and snacks for the plane. We get to security and I'm thrilled because there's a handicap lane. WELL...the airport is SO packed...that they let other people get in the line. (which means I will be holding up regular people...not just those that hold up people like me!). Then, the security gal tells me that I have to take Isaac out of his infant seat, put the seat on the belt, fold the stroller and put it on the belt, and then carry him through the security metal thing. Then, we have to go back through with the oxygen thing...which makes the metal detector go off....SO NOW...Chris and Eli are at the end of security and they make me take Isaac and the oxygen to the other lane to be checked. I'm looking through the glass at poor Chris...and he's trying to get the carseat off the belt, the stroller, the babybag, laptop, 3 pairs of shoes...and Eli's trying to get his carry on suitcase off the belt! FINALLY..someone steps in to help Chris (because you KNOW that he doesn't know how to even open up the stroller). They check Isaac and myself for explosive material, check the O2 machine...and then we're free to go! (unbelievable!)NOW...we get to our gate, get some pizza, and go to the bathroom before we board.THEN....we board the plane. The big boys go ahead of me....I'm carrying Isaac in his infant carrier, carrying the over-stuffed baby bag, and pulling the O2 machine (just a site to see!) I sit in one row (window and middle) and Chris and Eli sit behind me (Chris doesn't want to sit by himself because he hates flying). So...the place starts taking off...and I have to put my hand between the seats behind me so that Chris can GRAB it with BOTH hands (sweating profusely at this point I might add)...until we reach cruising altitude and he can let go of my hand!Isaac stays awake the WHOLE time...but, I put his headphones on and he watches Yo GabbaGabba. Eli and Chris watch the Simpsons on the psp...until Eli decides that he wants to watch a Thomas the train movie on my laptop. Chris pulls the laptop out...and I left it on and now the battery is dead! Eli was almost in tears! Thank goodness we were ready to land at this point!!! AND there...like a Christmas miracle...was MANDY...there to rescue me and help me!!!Long story short...we make it to Mandy's house...order in pizza, eat...then, Isaac and I are off for the 2 hour drive to Stanford!Where yet another story is about to happen....I go in to check in. Isaac is asleep...so, I just take the carrier in (and unhook him from the O2...he won't die without for a little while). She tells me that she indeed found me a room on the first floor...but, the parking lot is full, so...I'll have to park around back and WALK up a flight of stairs. I told her that was the WHOLE purpose that I requested a ground floor room...I have a baby in a stroller and on O2!!! (HELLO...does anyone hear me?!?!) The lady told me to just put Isaac in the room and then take the car around back and park (she IS crazy!!) So, I just pull up behind the cars in front of our room...and unload our suitcases, babybag, and even the O2. Then, I drive around back and put Isaac in the stroller and push him UP the driveway, down the sidewalk, and back around to our room (at 10:00 at night!) I tell you what...I fell asleep SO fast. I put Isaac in one bed (surrounded by pillows) and I had my OWN bed (heavenly!). Then, something went terribly wrong! Isaac woke up at 3am and would NOT go back to sleep! So, at 5am, after starting up his feeds...I patted his bum until he finally gave in! THEN....the clock woke us up at 7am to get it together to be at our appt at 8:30...which we barely made!

Now...for the appointment! And Vanessa (and anyone else who doesn't understand why I travel for a simple cleft surgery). Well...first of all...just because of Isaac's heart and how hard he recovers from anesthesia...I'd rather him be at Stanford where the anesthesiologists know him and Dr. Hanley is there if something heart-related happens. SECOND....the ONLY children's hospital in Las Vegas is fine...but, it took them 2 weeks when Isaac was born to even notice that he had a cleft palate and that's why he couldn't drink from a bottle. SO...if that's how attentive they are...I need my delicate flower at the best place that can take the best possible care of him. (I don't know...it could be overkill...I'm 95% sure that everything would be ok if the surgery was done in Las Vegas...but, I just don't want to take any unnecessary risks on such a minor surgery.) Call me crazy!!!I met the plastic surgeon that would do the repair. He was awesome! 100% glad we made the trip. They have you see a whole craniofacial team (which LV doesn't have)...so, we also saw speech (who gave me new ideas), ENT (who saw that fluid was still pooling in his ears...so, he'll need tubes in his ears while he's under for the cleft repair), he took a hearing test (which showed that one ear doesn't hear too hot...so, we'll have another test done in 3 months)....I think that's all we saw. It was just good to be evaluated from all the specialists at one place (even though it took 4 hours!) We actually went ahead and scheduled the cleft palate and ear tube surgery for June 18th!! In hopes that he'll be recovered well before his heart surgery at the end of the summer. BUT first...we have to be cleared for this surgery by cardiology. So, next week when we see Dr. Mayman...he has to fax a copy of the echo report to Stanford and they'll conference with the cards there...and together they'll all decide if his heart is healthy enough for the surgery. If it isn't...then, he'll have to wait until he's recovered from the heart surgery...which would be middle of RSV season and close to his 2nd birthday.We'll see!!!

So now...I'm at Mandy's house...watching her make goodies and chase her red-headed 18 month old around!!! NOW...we rest!!

Andrea...I'm babysitting for my sister tomorrow night so that her and her hubby can go out on their anniversary...but, email me your phone number and I'll see if I can squeeze in a visit with you!!!

Megan..I'm off to check on you now...I hope Eli's doing good today and the cath went great!!!

Thanks for checking on us...we did it...we did it!!!!I feel like a big girl now!!!

Posted by
Kathy

17
comments:

I should have listened about going to the bathroom first...oh no! You have me laughing so hard. Jonathan thinks I am a nutcase. I am so glad that you made it there safe and sound...is anything ever smooth sailing for us? Glad that the appts went well...the tubes are a lifesaver! They made our lives so much easier with the mousey man.

Kat,All through your teenage years you and your dad made fun of me because of "THE SYSTEM". Everything needed to be organized, planned ahead and prepared for. Do you see NOW why I was such a PAIN??? Now YOU are the one with the schedules...which YOU always hated to follow. It kind of comes full circle. I can't wait until Chris starts complaining about YOUR SYSTEM ! ! !

I am proud that you attempted the trip without Joe. I knew you could do it. This will help teach Chris what life is like. He might have to fly ALONE with Eli at some point and time. Be sure to point things out at the airport. Have him show YOU which way to go. And by all means....teach him how to open that stroller.

I'm so glad you're my daughter. So many people are so impressed with you, it makes me proud!!!

There's not much to say. I've living the blog this week. But I do have to give Kat and the boys credit, there is NO way I could do what she does. Even walking thru the airport to meet them at the gate, they were all smiling. (I would have been freaking out.) Don't worry mom, I'm going to be able to go thru security on Friday to help Kat to the gate.

Yay! I love it when you can get soo much accomplished all in one fell swoop!!

I totally understand you about sticking with the same docs. I feel tied to the area where I live because we've done all of Kanani's care with the same docs... I would choose the same as you- going back to Stanford. Afterall, by now, his medical file is probably reams of paper... and lets face it, these people are now family!!

Gotta say. LOVE the tubes! It has made such as HUGE difference in staying more healthy especially with immunodeficiency problems. My only tip is to have them check on his adenoids while he's under...

Good luck with the cards consult on whether he is recovered enough for his repair scheduled for June. Sending positive thoughts your way...!

Okay - I am laughing! I can just imagine you - and that Southern drawl. I am so happy that Isaac's appointments went well. He is awesome! I know that he will be amazing when it comes time to get everything taken care of. I hope that you enjoy your time with your sister....try to get some rest. You deserve it!!

Oh Kathy, I hope you didn't take my comment the wrong way. Any surgery is serious. I just didn't understand why you went to Stanford in the first place..meaning I wasn't sure if you once lived in CA or it was a choice of yours to go there. I think Stanford is a wonderful place and would have opted for us to go there if I could of. I'm tired just reading your post...what a day you had. But your supermom and you get through everything!

As for us, the O2 has been off all week and I'm hoping it stays that way. She does drop to 90 when sleeping, which I would like to see her at 94 or better but I figured since she isn't too low I'll keep it off. She is eating pretty good, still not as good as a few weeks ago but at least she is eating. You know whats weird is she sats lower when sleeping on her right side? Any ideas? I'm so jealous you might hook up with Andrea...we totally need to plan a trip to Vegas one day.

Oh my, I can just picture all of that chaos. I laughed so hard at the thought of Chris and Eli trying to get all the big heavy things off the xray belt. I don't know how you guys did all of that...it is TOUGH traveling with a baby, much less an oxygen tank and two other kiddies and everything else. You are AMAZING!

I'm so glad you are going to Stanford. I know exactly where you are coming from with wanting the best care for your man AND wanting to be somewhere that knows him. I wouldn't do it any other way, either! And it's great that you got some answers and a surgery date (woohoo!) and tests done, etc..

Have a great rest of your trip at your sister's! I hope you're able to relax a bit finally and enjoy yourselves.

Glad to hear you made it!!! I know how you feel about the airport and all the JUNK! I tried it with a 1 yr old and 2 yr old and ALL OF OUR JUNK! :) What exactly will the surgery consist of, and how long will it be; details!? Enjoy the flight home and be careful/safe. Love, Abby

Isaac

About Isaac

This is the blog following the adventures of Isaac, our third son. He was born (3/28/07) with Severe Tetralogy of Fallot, Pulmonary Atresia, VSD, Major Aortopulmonary Collaterals, Right Aortic Arch, DiGeorge Syndrome, and Cleft Soft Palate. We appreciate all of the support we have received from our friends and family and welcome you into our hearts and lives as we continue on this journey.

As of Nov. 2009, he's FINALLY sitting up and crawling!! He's such a quiet little man...no babbles yet...but, when he starts talking...I'm sure he'll never stop! He's solely g-tube fed, but has started 1-2 jars of baby food a day (it might take a while...but, he'll learn to LOVE food like his mom and dad!) His favorite thing is "Yo Gabba Gabba"...he's glued to that show ALL DAY, EVERYDAY

To date he's had....1 stomach surgery, 2 open heart surgeries, 6 heart caths, and 1 cleft palate repair (where they also did a little work to his tongue and released some webbing on the inside of his cheeks).

Chris

Chris....was born on September 9, 1994. He was the only child for 8 years before we had Eli (see a pattern here...I need a break between kiddos!). Chris has been home-schooled from 3rd grade-7th grade...and now he's back in public schools in the 10th grade...and I'm proud to say that he's on the A/B honor roll!!! He's currently trying out for the wrestling team and goes to Boy Scouts. He likes video games...and that's about it. Chris is ready to start driving a car, get a job, and go to college (I'm not sure why he wants to grow up so fast!). He has such ambition and loves to share...and THANK GOODNESS he doesn't have a girlfriend yet (my nerves couldn't take it)!!

Elias

Eli...was born on June 13, 2002. He was our baby for 5 years before we had Isaac....so, he's getting use to being the little brother of Chris and the big brother of Isaac. He loves Star Wars, Hilary Duff, and Thomas the Train (not necessarily in that order!). He's currently a 2nd grader and loving school (where he LOVES to read!). He has such a tender heart and feels compassion for everyone...but, also is a tattle-tale much of the time!